My Invisible Illness Photo Shoot
Introduction People often remark that those of us with invisible illnesses “don’t look sick.” However, we deal with substantial physical and emotional challenges. To shed light on the often hidden side of living with chronic illness, I completed an “Invisible Illness Photo Shoot” with dear friend and phenomenal photographer Jessica Keener Photography. Goals of the photo shoot 1. To illustrate that you cannot tell what someone is going through just by looking at them. I hope that these photos help people remember to “be kind, for everyone you meet is fighting a hard battle” (Ian MacLaren). 2. To help those who have similar invisible challenges not feel alone. I have benefited from…
To my Chronic Illness Medical Team…
It was very therapeutic for me to write a guest blog post for CreakyJoints, a patient advocacy and education site that focuses on arthritis and related conditions. To my chronic illness medical team is my love letter to the often unsung heroes in the medical profession: providers who care for patients like me who have chronic, complex, invisible illnesses. I am so fortunate to have had dozens of compassionate, caring providers during my 16 years with rheumatoid arthritis. I hope to inspire other providers to go into some of the less popular specialties such as pediatric rheumatology, where there are currently some shortages nation-wide. You won’t have the most straightforward patients,…
A New Way to interpret “But You Don’t Look Sick”
I am happy to report that I am now blogging on the Creaky Joints website. Creaky Joints is a nonprofit that provides information sharing, support, and advocacy resources for persons with arthritis and related conditions, many of which are chronic, invisible illnesses. My first blog post was A New Way to Interpret “But You Don’t Look Sick – please note the link is currently broken but I’m told it will be fixed soon (as of 10/2019). While we’re waiting for it to be back up, I’ve posted the text for this post below. ————————————————————————————————————– When I communicate my diagnosis of rheumatoid arthritis to someone for the first time, I’m often told…
The Storm After the Calm: 8 Lessons Learned After A Tumultuous Postpartum Experience With Rheumatoid Arthritis
I was recently honored to share my pregnancy and postpartum journey with the popular and helpful website Autoimmune Mom, and it is now housed on the American Autoimmune and Related Diseases Association site. The full story can be found here. The post details my journey from a relatively tranquil pregnancy to a postpartum “storm” due to my chronic illness issues (including rheumatoid arthritis). It includes three sections after Charlie’s birth: Survival, Mastitis and Flare-Ups (0-3 months) Feeling Like I “Almost Got This,”or Wayward Optimism (4-16 months) The New Normal: Accepting that life/parenting/my health is now in a permanent state of flux (16 months to present). The gist of the post is that therapy…
My Chronic Illness Playlist
Why music? While managing my autoimmune disease rheumatoid arthritis over the last 12 years, I’ve found music to be helpful in a variety of situations. Some songs help me calm down when I’m anxious, other songs allow me to just “be” in a sad moment, and some music inspires me or puts everything in perspective. Not surprisingly, research has shown that listening to music can have many positive effects on one’s mood as well as other aspects of the mind. Research specifically on the use of music in persons with chronic illness have found it to have beneficial effects as well. With that in mind, I’d like to share my personal “chronic illness playlist.” I’ve divided the songs…
Bringing Home Baby Without Breaking Your Body – How to protect your joints when you have arthritis and a new baby
Despite infants’ diminutive size and stature, caring for a new baby is a very physical job! Many new parents and caregivers experience joint or muscle pain after repetitive stress caused by lifting, carrying, diapering, and holding their baby. It’s estimated that between 25-50% of new parents experience DeQuervain’s tenosynovitis (or “Mommy thumb”) alone. It is also common to have pain in other areas such as the wrists, shoulders and back. These issues are of course exacerbated by chronic underlying illnesses such as autoimmune arthritis. From my experiences as a new mom with rheumatoid arthritis and from my training as an occupational therapist, I would like to share tips on my…
The Role of Facebook Communities in Social Participation for Persons with Rheumatoid Arthritis: A Content Analysis
Research overview & summary My colleague Kristin Jones, OTR/L and I conducted the following qualitative research. It details the most frequent topics of conversation for persons with rheumatoid arthritis who engage in disease-specific Facebook groups. My experiences as a patient participating in these groups inspired this research. In order to objectively assess the communication content of these social media groups, Ms. Jones and I performed the data analysis seen below in the data overview section. The poster is pasted below and can also be found at SlideShare. Research poster Significant Findings 1. The majority of Facebook group posts served to provide information or support. Information was provided most often in the form of advice…
Arthritis Gadgets/Approaches that Help During Pregnancy and Pregnancy Gadgets/Approaches that Help for Arthritis
Throughout the last 9 months of my pregnancy, I’ve been pleasantly surprised to note that many of the gadgets and approaches that are recommended for arthritis can also be helpful for pregnant women. Conveniently, many of the strategies and gadgets recommended for pregnant women can also help persons with arthritis! I’d like to share some of my favorite items and approaches so that others with arthritis or pregnancy can discover how to protect their bodies and perhaps be more comfortable. Arthritis Gadgets and Approaches that also Help During Pregnancy 1) The Reacher / Grabber The reacher/grabber is a classic gadget that helps you avoid bending down to pick up items.…
10 Years with Rheumatoid Arthritis: What’s the Impact?
I recently realized that I have lived with rheumatoid arthritis (RA) for ten years, or roughly a third of my life! In that time I’ve graduated college, traveled to 12 different countries, lived in 3 states, traveled to/through over 15 states, started swing dancing, adopted 2 kittens, earned a Masters degree in occupational therapy, got married, bought a house, and more. I’ve also spent a considerable amount of time and money managing this chronic illness and mitigating it’s effects so I can live with the best quality of life possible. In honor of my diagnosis anniversary, I’d like to share how RA has (and hasn’t) affected my life over the…
Arthritis Humor and the Therapeutic Powers of Laughter and Social Media
Last week I started a GIF based Tumblr blog called “Arthritis Humor.“ My goal for this blog is to help patients with autoimmune arthritis (and other chronic illnesses) transcend their experiences via humor, and feel less alone by connecting to others through shared laughter. Why find the humor in arthritis? As a healthcare professional and patient, I will concede that there is nothing intrinsically funny about either category of arthritis: osteoarthritis (“wear and tear” arthritis, the kind associated with aging) or autoimmune arthritis forms such as rheumatoid arthritis (whereby one’s own immune system mistakenly attacks the lining of one’s joints and other body systems as well). However, as a patient with rheumatoid arthritis (RA), I believe…